Re: I'm new here,and was wondering if anyone could help me

[Guest guest]

Did you get a " second opinion " ?? I would for such a serious surgery...

>

>

> Hi,

> My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My

> surgery is scheduled for April 16th. I am so scared and I have know idea

> what is going to happen. I have a 3yr old, and was wondering if someone

> would please explain what happens after surgery. My NS said that I would be

> " out of it " , for a month. That I would have painful muscle spasms, and would

> not be able to do anything. I understand that I won't be able to carry my

> son around, but what else can I expect?

>

> What can I expect after surgery?

> Will I be able to walk up the steps?

> Will i be able to take care of my son?

> Will I be in a lot of pain?

>

> Please, can someone help me? I am so scared of this surgery, but if i don't

> have it done the dr. said i may become paralized.

>

> Thanks Pam

>

>

>

[Guest guest]

Pam,

That sounds a little unusual. I would seek a second opinion. I can't believe

you would be out of it for a month. You might be out of it for a few days

when you are in the hospital, as they provide you with meds to control your

pain. By the time you are discharged, you'll be with it. You should receive

treatment by a physical therapist after your surgery (before you are

discharged). If they know you have stairs in your home, they will make sure

you can navigate the stairs safely before you are discharged. I had a split

level home when I had my first surgery. The physical therapists made sure I

could navigate stairs safely before I was discharged. You won't be able to

lift your son (or anything more than a gallon of milk) for a month or so.

You will not be allowed to drive for the first month. You will not be able

to bed at the waist for at least 2 weeks (after that, you can generally

start bending, but only if it doesn't cause pain). You will probably start

OP PT at the 2 week post-op mark and they will start working with you to

regain your flexibility. Until then, you will have to use proper lifting

technique to get anything below the waist, bending at the knees and keeping

your back straight. If you have items in lower cabinets that you use

frequently, you may want to move them up. For example, I had all my bathroom

items to get ready in the cabinets under the sink. I moved those higher and

set them on the bathroom counter for the first 2 weeks. When I was sent

home, I was instructed to walk 3 times a day to my mailbox and back (typical

driveway). Then, increase my walks by a neighbor's mailbox each day.

Eventually, I will be able to walk far enough that I could decrease to 2

longer walks each day. By the 3rd week, I was walking in the evening with my

husband (at the time) throughout the entire neighborhood.

I would buy some comfy cotton drawstring pants and loose t-shirts. Those

will be most comfortable on the incision site - or loose cotton dress. They

also look acceptable if you have visitors. I would do some cooking before

surgery and freeze it. Espeically if your husband is not culinary inclined.

You will not feel like cooking for yourself, let alone your family for the

first 1-2 weeks after surgery. If you have meals frozen that you can cook,

that makes things easier.

I would get a second opinion and make sure that the surgeon has a lot of

experience treating adults with TC - and your kind of TC.

Try not to worry too much. It won't make the surgery or recovery any easier.

Jenn

>

>

> Hi,

> My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My

> surgery is scheduled for April 16th. I am so scared and I have know idea

> what is going to happen. I have a 3yr old, and was wondering if someone

> would please explain what happens after surgery. My NS said that I would be

> " out of it " , for a month. That I would have painful muscle spasms, and would

> not be able to do anything. I understand that I won't be able to carry my

> son around, but what else can I expect?

>

> What can I expect after surgery?

> Will I be able to walk up the steps?

> Will i be able to take care of my son?

> Will I be in a lot of pain?

>

> Please, can someone help me? I am so scared of this surgery, but if i don't

> have it done the dr. said i may become paralized.

>

> Thanks Pam

>

>

>

[Guest guest]

Hi Pam

I'm new here also. I'm 31 diagnosed 5 months ago had the surgery on 3/25. I was

in the hospital for 5 days. It is painful. I have a 15 month old daughter and I

was instructed no lifting, bending, twisting or lifting over 10 pounds until I

return to the doctor 6 week post op. It's 2 weeks and 2 days and I have someone

come to the house to care for my daughter until my husband comes home. The pain

is getting better but post op having terrible bowel problems. I have had chronic

constipation since the surgery. And a few bladder problems that have luckily

cleared up. I could walk up steps slowly and after the surgery they will have

you walk. Appox (24 hours after surgery).

Subject: I'm new here,and was wondering if anyone could help me

To: tetheredspinalcord

Date: Friday, April 9, 2010, 3:39 PM

 

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery is

scheduled for April 16th. I am so scared and I have know idea what is going to

happen. I have a 3yr old, and was wondering if someone would please explain what

happens after surgery. My NS said that I would be " out of it " , for a month. That

I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i don't have

it done the dr. said i may become paralized.

Thanks Pam

[Guest guest]

Hi Pam,

I totally understand your fears just wondering why you are going to get the

surgery, what symptoms brought you to the doctor, I'm 54 and never got the

surgery....

Sharon

________________________________

To: tetheredspinalcord

Sent: Fri, April 9, 2010 3:38:32 PM

Subject: I'm new here,and was wondering if anyone could help me

 

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery is

scheduled for April 16th. I am so scared and I have know idea what is going to

happen. I have a 3yr old, and was wondering if someone would please explain what

happens after surgery. My NS said that I would be " out of it " , for a month. That

I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i don't have

it done the dr. said i may become paralized.

Thanks Pam

Hi

[Guest guest]

Hello " allmanjra " Are you on narcotic pain meds? They produced horrible

constipation in my daughter after her surgeries and I shudder to think of

what she will be like after the next one. Now that we know, I guess we will

try harder to prevent it. Randee

In a message dated 4/10/2010 7:44:29 A.M. Central Daylight Time,

allmanjra@... writes:

Hi Pam

I'm new here also. I'm 31 diagnosed 5 months ago had the surgery on 3/25.

I was in the hospital for 5 days. It is painful. I have a 15 month old

daughter and I was instructed no lifting, bending, twisting or lifting over 10

pounds until I return to the doctor 6 week post op. It's 2 weeks and 2 days

and I have someone come to the house to care for my daughter until my

husband comes home. The pain is getting better but post op having terrible

bowel problems. I have had chronic constipation since the surgery. And a few

bladder problems that have luckily cleared up. I could walk up steps slowly

and after the surgery they will have you walk. Appox (24 hours after

surgery).

From: pbeatty20 <_mamabug13@..._ (mailto:mamabug13@...) >

Subject: I'm new here,and was wondering if anyone could help me

To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

Date: Friday, April 9, 2010, 3:39 PM

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My

surgery is scheduled for April 16th. I am so scared and I have know idea what

is going to happen. I have a 3yr old, and was wondering if someone would

please explain what happens after surgery. My NS said that I would be " out of

it " , for a month. That I would have painful muscle spasms, and would not be

able to do anything. I understand that I won't be able to carry my son

around, but what else can I expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i

don't have it done the dr. said i may become paralized.

Thanks Pam

[Non-text portions of this message have been removed]

[Guest guest]

Hi Pam...I feel confident he didn't mean out of it as in confused etc. but

most likely that you would be doing very little for a month! I hope you

have help for your three year old..lifting him/her will for sure be out of

the question for many weeks. Good luck!!! randee

In a message dated 4/9/2010 2:47:55 P.M. Central Daylight Time,

carrie6615@... writes:

Did you get a " second opinion " ?? I would for such a serious surgery...

On Fri, Apr 9, 2010 at 3:38 PM, pbeatty20 wrote:

>

>

> Hi,

> My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My

> surgery is scheduled for April 16th. I am so scared and I have know idea

> what is going to happen. I have a 3yr old, and was wondering if someone

> would please explain what happens after surgery. My NS said that I would

be

> " out of it " , for a month. That I would have painful muscle spasms, and

would

> not be able to do anything. I understand that I won't be able to carry my

> son around, but what else can I expect?

>

> What can I expect after surgery?

> Will I be able to walk up the steps?

> Will i be able to take care of my son?

> Will I be in a lot of pain?

>

> Please, can someone help me? I am so scared of this surgery, but if i

don't

> have it done the dr. said i may become paralized.

>

> Thanks Pam

>

>

>

[Non-text portions of this message have been removed]

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: darlene_self@... or

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[Guest guest]

Hi Pam,

Detethering is different for everyone as we are all somewhat unique in where we

are tethered, what else is going on (syrinx et.).

However, I have not heard anyone say they were " out of their mind " . I was out

of it and very anxious for about three days post surgery. But then I was on the

mend, walking, communicating etc. For the first two weeks post op I did need

some help at home. My husband helped alot. He even had to help me dress. From

my experience I could barely take care of myself. But again everyone is

different.

Maybe your NSG could be more specific?

Good luck Pam,

Marti

>

> Hi,

> My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery

is scheduled for April 16th. I am so scared and I have know idea what is going

to happen. I have a 3yr old, and was wondering if someone would please explain

what happens after surgery. My NS said that I would be " out of it " , for a month.

That I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

>

> What can I expect after surgery?

> Will I be able to walk up the steps?

> Will i be able to take care of my son?

> Will I be in a lot of pain?

>

> Please, can someone help me? I am so scared of this surgery, but if i don't

have it done the dr. said i may become paralized.

>

>

> Thanks Pam

>

[Guest guest]

-

Congrats on ur pregnancy! And with twins, u get 2 kids for the price

of 1 pregnancy (price being pain). I'm sure once those beautiful

babies r in ur arms, u will forget the 9 months of pain from being

without ur meds. Even if u don't forget, it will b worth it.

Congrats again!

Jenn

Sent from my iPhone

> Pam,

>

> I am sorry to hear about the predicament that you are in. I went

> through my detether last June @ the age of 37 at UPMC. The first

> month was not easy as I had to do bed rest the entire time due to a

> spinal fluid leak that would not heal. The pain was bad the first

> week but tolerable after that as I was used to being in pain prior

> to surgery. It was mostly when getting up and down and would

> subside once I was lying still. The pain meds gave me extreme

> nausea and constipation so I only took them for a few days upon

> leaving the hospital and just dealt with the pain. I was fortunate

> I guess that I did not have any children to look after. You will

> need help and I hope that you have some family/friends lined up. I

> was not able to life anything over 5 pounds the first 5 weeks and

> did not feel like doing much of anything. I went back to work part-

> time after bout 6 weeks and it took me several more to get back to

> full time. My doctor did

> not feel it was necessary to do physical therapy as I was active and

> in good shape prior to surgery but to do it all over again, I would

> have gone through it.

>

> If you have time before surgery, I would suggest making and freezing

> as many meals as you can. Also line things up in your pantry or

> closets so you just have to reach straight in to grab them as

> bending at the waist is off limits. I am sure that PT or OT in the

> hospital will give you a “grabber†device to reach things that

> are too high or low – this was always with me. Have several pillows

> and a blanket for the ride home as you will feel very bump along th

> e way. I know that Nina in the group has a website that is full of

> info and tips. If you have not checked it out already I would do so-

>

> http://www.btinternet.com/~tetheredcordresources/tethered_cords.htm

>

> After about 8 months and new meds for nerve pain, I can honestly say

> that I was better and in little pain. Everyone has a different

> story regarding recovery time as there are different types of

> tethered cord – I have heard anywhere from 2 weeks to several years

> before they felt better. My doctor told me I would be at my cousin’

> s wedding and back to work part-time after 2 weeks and that did not

> happen.

>

> I now face a new challenge as I am now pregnant with twins and have

> stopped taking my meds for the nerve pain. Why this happened after

> 14 years of marriage and trying I am not sure. I am in pain every

> day but it does not compare to how I felt prior to and right after

> surgery. I just hope my back holds out for the next 6 months.

>

> I wish you all my best and will say prayers that your surgery is

> successful and recovery quick so you can get back to living.

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Mon, April 12, 2010 2:23:50 AM

> Subject: Re: I'm new here,and was wondering if anyone could

> help me

>

>

>

> Hi Sharon,

>

> Thank you so much for responding. I feel very much alone and afraid

> of what is ahead waiting for me and my family. I first starting

> feeling very week and tired all the time. I thought my thyroid was

> acting up and had blood tests, and they came back normal. My pcp

> said stress and running after 2 young children (2.5, 1.5 and 11) was

> taking its toll and to slow down and relax more. Then I started to

> have a lot of muscle pain and weakness in both legs, left more than

> right, then it progressed to pain and numbness, weird sensations and

> lots of random movements. I also have spina bifita occulta,and the

> patch of hair on my lower back was getting longer and longer and the

> lower back pain was getting worse. Then I started to develop lesions

> on my lower back and they would break open and leak a clear

> discharge. I thought they were pimples until they wouldn't heal.

> This had been going on for about 2 years off and on. I also lost

> some function of my

> bowel and bladder which I had contributed to having children. Then

> you know how sometimes something tells you there is something just

> not right? Well I decided to tell my pcp again what was going on

> and he still said stress and pimples. Then my hands and arms

> started going numb all the time. The muscles in my arm felt all weak

> and squishy. I had a nerve conduction test done and they said I had

> a bad case of Carpal tunnel. So I had both hands done in Jan and

> March respectively. When seeing the NS I told him about the

> numbness and lesions on my lower back. He unfortunately was not

> able to help me as he only did hands and feet. So he sent me to my

> current NS and he did a MRI and Cat Scan and told me that I had a

> tethered spinal cord. He is the leading Neurosurgeon in

> Pennsylvania and he heads the dept. of Neurology at Allegheny

> General Hospital in Pittsburgh which is also one the the leading

> hospitals in the country. I have a team of 10

> drs. 4 NS, a micro neurosurgeon, a orthopedic surgeon, and a host

> of other drs. who have taken on the challenge of detethering me. I

> also have deformities of my spinal column that have to be fixed

> prior to the detethering. I had a consult with all drs on my team

> and they have come up with a plan for the procedure. I have decided

> to have the surgery to hopefully stop the progression of the

> damage. They feel that if I don't have the surgery that I will lose

> all function of my legs and become a paraplegic. I have 3 young sons

> that need me to be mobile and that is the main reason to do the

> surgery. So I either take the risk and have a chance at mobility or

> I don't have the surgery and become paralyzed within the year. So

> for me, I would rather have a choice and face the risk of paralysis

> rather than not taking a chance and being paralyzed anyway. So as I

> see it, I'm damned if I do, and damned if I don't, but with surgery

> at least I

> have a chance and a choice. Once again, thanks for writing and I

> hope to chat with you again soon

>

> Pam

>

> I'm new here,and was wondering if anyone could help me

>

>

> Hi,

> My name is Pam and I am 44yrs old. I have been diagnosed with TSC.

> My surgery is scheduled for April 16th. I am so scared and I have

> know idea what is going to happen. I have a 3yr old, and was

> wondering if someone would please explain what happens after

> surgery. My NS said that I would be " out of it " , for a month. That I

> would have painful muscle spasms, and would not be able to do

> anything. I understand that I won't be able to carry my son around,

> but what else can I expect?

>

> What can I expect after surgery?

> Will I be able to walk up the steps?

> Will i be able to take care of my son?

> Will I be in a lot of pain?

>

> Please, can someone help me? I am so scared of this surgery, but if

> i don't have it done the dr. said i may become paralized.

>

> Thanks Pam

>

> Hi

>

>